The annoying part…

Yes, we are at the annoying part. 🙂 Now all we are really working on is feeding. She is making small improvements but still hasn’t taken more than 25ml by breast or bottle. 5:00 AM UPDATE:  Right after I posted this I spoke with our night nurse Rachel and she said that Finley took 46ml at her 2:00 AM feeding – wahoo!! A new record! Half of her 81ml feeding.

I spoke to the surgeons yesterday and we won’t need to talk about a G-tube until we are at this for a month post surgery. We also have the option to go home on the NG tube but we would need training on how to drop that since there is a risk of aspiration if you place the tube in the lungs instead of the stomach. Depending on how she is doing by Monday, we may start with fortifying my breast milk to try and help her gain weight and get stronger so that in turn she could have more energy to eat more.. Last weigh in she was 9lb 8 oz.  She got her first bath Tuesday night and she did NOT like it at all – but I got to see her without any wires and tubes attached to her and it was great to see her like a regular baby!

Please pray for her continued healing and recovery and her to start taking more food, and for the PH to stay away (scary that there is this medical issue out the lurking that could come back anytime.. but I will not be afraid of it  – I will trust God). I praise him for all his has done already and just pray for the day when we can all go home as a family.

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3 thoughts on “The annoying part…”

  1. Finley is doing so well!!! Praying for her continued healing and her feeds to just take off. Don’t give up and keep working at her feeds. It is such a workout for CDH kids to be able to breath, suck and swallow all at the same time, but Finley will get there. One thing when I was in the NICU with Ian, is I had to find a quiet corner or have them put up a screen so there were no distractions around and maybe less noise. I also couldn’t cuddle Ian at all. I had to hold him away from me and support his chin/mouth, otherwise he would just fall asleep when he was up next to my body. That is great they are going to add calories to her milk to help her grow! An NG tube is not scary at all to put in! We used it for 3 weeks after bringing my son home and he did pull it out many times. I think once he got home, he just took off on his feeds. I think it was the environment for sure. Another idea is to have the same nurse do Finley’s feeds or you may have to stay around the clock to feed her. Every person feeds differently and she could be picking up on that.

    Praying for Finley!

    Hugs,
    Tracy, Ian’s mom from CHERUBS

  2. In all good time she will improve~prayer to continue…..hang in there as I can understand why this wait/worry is very difficult.

  3. Just wanted to echo Tracey’s comments. Although it seems scary at first, and NG tube is no big deal. They won’t send you home with one until you are trained and comfortable with it. It is not hard. I had to learn how to place an NG tube before CDH ruled our lives. We had a foster baby with Downs who required one. The NICU nurses were very patient to listen to all of my fears about it and help me understand the process. Believe me, you will know without a doubt if it goes down the wrong way!!!
    Try to be patient during this time. I was so eager to get home with Sawyer that I pushed the issue really hard. Hindsight being what it is, I wish we would have stayed just a few days longer. I don’t believe his brain injury would have been discovered, but he was allergic to my milk, and that didn’t manifest until we were home for about a week. Could have saved a lot of headaches and worries had we been a bit more patient. Good Luck. You are so blessed to be at this point. Keep your chin up.

    Pamela,
    Sawyer’s mom. born with LCDH diagnosed at 35 weeks, severe food allergies, reflux, nonverbal, cerebral palsy dx @ 17 months. The biggest miracle my family has ever experienced.

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